About the research

#BreathlessNotVoiceless

About the research

The Living with PH survey gathered important statistical evidence about issues affecting PH patients and their loved ones, and made it clear that finances were an area of concern for many. We wanted to build on these findings to find out which elements of people’s financial stability are affected the most, and to understand the impact that has on their lives. We published the results of the Living with PH survey in 2017, along with a commitment to discover which areas of people’s finances were being affected - and use the findings to drive change. The financial impact survey asked about changes in employment, experiences of claiming benefits, costs related to healthcare, insurance, debt, and mental and emotional wellbeing. It was mailed to everyone who responded to the Living with PH survey and said they would be happy to be contacted to take part in future research. The surveys were returned to us by post and 171 responses were received. 63% of those surveyed said that financial worries had an impact on their lives.

26% 63%

said it had a “major impact”.

said PH affects their ability to attend work or education.

More than just numbers

> An important part of this research centred around interviews with patients. This qualitative research provided vital insight into the true extent of financial impact. > Seven interviews were conducted via telephone and quotes from these conversations are included throughout this report.

The future financially is really quite grim for me.

For a copy of the Living with PH report please email office@phauk.org or call 01709 761450. The results can also be accessed at www.phauk.org 05